TOPIC:

It has been 15 years since I last posted on this board. I don't have ITP. I have a diagnosis of cyclical thrombocytopenia purpera with rebound thromobocytosis. During this cycle, my nadir period is severe (and always has been). My typical treatment involves platelet transfusions when my platelet counts are low. In May of this year, I had a successful hip replacement. However, the thrombocytopenia portion of my cycle has doubled in duration requiring additional platelet transfusions. Ultimately, I will head to a teaching hospital for advice. I am posting on this board to ask two questions.
1) My orthopedist said that it would take about a year to fully heal from the hip replacement. Has anybody experienced any prolonged (multi month) change in their platelet count, up or down, post hip replacement surgery? If so, did the change continue beyond a year? I am trying to decide how long to wait this out before reacting.
2) When I last posted on this board, platelet boosting drugs were relatively new. I may have the option to try these. I have to consider the thrombocytosis portion of my cycle. I also have to consider long term side effects. I thought by now there would be some ITP people with long term experience with these drugs. I was wondering if anybody could comment on their long term experiences?

I apologize for writing to the ITP board without an ITP diagnosis. Unfortunately, my situation is pretty rare with little medical research to consult. When I posted several years ago, I received much good advice (and made contact with one other person with CTP). This helped me establish a successful care plan. I thought that I would try again.

sneakerlw
pdsa.org/platelet-growth-factors.html  gives a decent overview of the medications available. 

I don't know how you will manage your thrombocytosis part of the cycle though. There are protocols for dosing with different platelet counts, but stopping any of them abruptly  due to a high count can lead to a rapid drop in platelet count. 
Have you had IVIg mentioned? That generally leads to a transient rise in counts and may be more appropriate. (This is my personal opinion but may be worth discussing with your haematologist).

Thank you for replying. I have not tried IVIG. I will bring this up with my Hematoloogist. Over the years, it has not come up in discussion.
However, I was originally diagnosed with ITP and tried Prednisone and WinRho. After my diagnosis was changed to CTP, I tried Danizol. They did not work for me. 
I share your concern about trying a platelet boosting drug with intermittent thrombocytosis. However, I may have to try these drugs. Platelets are in short supply in our area and my usage is starting to interfere with quality of life. If platelet boosters are effective for me, I suspect that my usage would then become long term, multi year.
I am out of touch with current ITP treatments and I was wondering if there were some ITP patients that have used platelet boosting drugs for many years, or since inception. Maybe there have been some studies along this line? I just haven't found them as of yet. This is one of the reasons why I am visiting the board.  
Thank you again for commenting.
 

I took Romiplostim (N Plate) for a year the first time but stopped it as my counts swung all over the place, highest 230 lowest 6 and anywhere in between. Dose related bone pain in my hips, the higher the dose the worse the pain.

After that I took Eltrombopag (Promacta/Revolade) for 4 years. I gave that up when I lost response on the highest dose. Dietary restrictions need observing too. It played havoc with my sleep, permanently felt as if I was starting with a cold  and I developed anaemia and have been on iron tablets as a result.  

I tried Romiplostim again  for 5 months when Eltrombopag failed but couldn't stand the bone pain and gave it up with a count of 15.

Another 6 months on Eltrombopag  and after a count of 6 and ending up on hospital with a pulmonary bleed I refused to take to any more. 

Avatrombopag (Doptelet) has not yet been licensed over here but has in the US. I know it has no dietary restrictions. Hopefully it will be licensed here soon and I will give it a go. 

Good luck with what ever you decide and hope your new hip works wonders. 

Thank you again for your reply pertaining to your personal experiences with the TPO agents.
Also, I did read through the article (from your link above). Very helpful information.
I will see what the next group of doctors recommend. In the interim, I will give my hip more time to heal and hope that my cycle reverts back to its former norm. 

I started Avatrombopag (Doptelet) in March 2020 at 20mg/Day. My counts raised a little (low 30's to 70) then the Covid Vaccines dropped them way down into the 20's. I got Covid last October and they jumped back to almost 70 and slowly dropped back to the 40's and 50's.  I upped my dose of Doptelet to 40 mg M,W,F and 20 mg T,TH,S,S and have slowly been climbing since. I am currently around 115.  I have had no side effects at all and just take my pill(s) in the morning with breakfast.

I've been taking NPlate for 8 years with no noticeable side effects.  I'm currently on a very small dose, less than the standard beginning dose of 1 mcg/kg.  I've never attained steady control over my counts - that is, the recommended 50k average - but it has kept me out of single digits the entire 8 years.  Sometimes count goes much higher than 50; but as long as it stays below 100, I'm willing to accept the increased clotting risk.  

Thank you all for your comments. As a little more background, I was offered Nplate (experimentally) many years ago out of concern for becoming refractory to platelets. My treating hematologist was against Nplate for valid reasons - I was peaking around 900, had had a TIA, no info available on timing, etc. For the past several years my nadir has lasted for 10 days. I continue to fall in platelet count throughout this nadir period. I am boosted with one single unit of platelets, about every 3 days or 3 times in total per cycle, to bridge across this low period. Each individual cycle lasted 50 days. Consequently, I was receiving about 20 single unit transfusions per year. No problem tolerating the platelets other than the time required. I was happy!
Post hip surgery, my peak is around 500. the cycle is around 55 days. My nadir period is 17 days below 10. Counts of 0-3 have become more common. (No bleeding. Petichia, bruisinng and mouth blisters are my signs. (Also fatigue, irritability, pessimism, emotional, etc. which are probably as bothersome as the physical signs). Consequently, I am on track to receive about 40 transfusions this year. Transfusions are instant "feel better" for me but very time consuming to secure. With lab work, infusion center scheduling, securing platelets, travel time, each transfusion has become a two day affair. Sometimes I spill over into the ER to secure the platelets (and an ER visit for my purposes takes about 10 hours in our area).
My hematologist still believes that continuing this approach is the safest for me. I don't know how much leadway he has to prescribe platelet boosting drugs with my diagnosis. However, I believe that the drugs have been on the market long enough to investigate again and I will head to a teaching hospital again for evaluation.
I am very happy to have alternatives and the care providers that I deal with are great. I wouldn't want anybody to think otherwise.
Lastly - I am still trying to figure out why the cycle changed after the hip surgery (assuming that there is a connection). Trauma? Did I lose some bone marrow? I don't know. It was like the clock reset.

Wow
I very much doubt 40 transfusions a year would even be an option over here in the UK. People do not get paid for donating thus there are strict protocols for prescribing a transfusion of any kind not just platelets. As far as I am aware platelet transfusions  are only given if bleeding is life threatening or prior to emergency surgery with a risk of haemorrhage. 
My count has been in single figures multiple times over the last 8 years, I have  had bleeding gums, lungs and nose and  black and blue from head to foot due to bruises  but not once has a transfusion been mentioned. 

One thing that is different about my situation versus ITP is that I retain platelets when I am transfused. I get a boost in platelet count of about 20K when I am transfused. If I start with 5, I am boosted to 25, but three days later I am back at 5K again (and dropping). 

Your comment about transfusion criteria in the UK is interesting. I can waive off on transfusions at any time. Our local infusion center was bought by a medical "group". Initially, they established a mandatory procedure of "test today, transfuse tomorrow". I would test with a count of 3 and be told to schedule for transfusion the following day. In the event of an active bleed, I was instructed to go to the ER (about an hour away for me). They have since changed this rule to "test today, transfuse today" with counts under 5K; this may not be true for all patients but I know that it applies to more than just me. However, I get conflicting feedback from my care givers. Some get concerned about an absolute platelet number under 5, which makes me anxious. Some seem to link action to active bleeding. Very confusing for me. Given the option, I try to stay above 5K. 

sneakerlrw
As a point of interest have you ever tried steroids to boost your count ?

Yes. I took prednisone for about 100 days in 2007 when I was originally diagnosed with ITP. The dose was 60mg. 

Would quick bursts of Pred at a lower dose be the answer to your low counts? 

I don't know - but I have no problem in asking my hematologist. It has been many years since I last tried prednisone. Thank you for the suggestion!